Monday, March 24, 2014

"Your message did not fall on deaf ears."

Last week I traveled to Washington, DC for two meetings. One was on the important role that patients & caregivers plan in understanding medication adherence, and the other was on patients and caregivers being involved as disruptive innovators in healthcare; both topics very close to my heart. While I was reimbursed for my travel expenses (less alcohol), I was not compensated for my time. I struggle with this. Part of me gets angry because my time is valuable, to a lot of people, and I want these folks to see and appreciate that. The other part of me wants to be heard, no matter the compensation.
During one of the meetings, I participated as a panelist and shared on the role that I play on our healthcare team. Also on our panel was the amazing Emily (@emilykg1), an adult CF patient and passionate advocate. I view myself as a partner, and I work with different tools that our doctor has recommended (medications, medical devices) and with tools that I've found or created to manage Drew's health as best I can. I think that our message was well received, that by partnering in care, meeting patients where they are rather than where you want them to be, has meaning. And patients who are meaningfully engaged in their own care have a better chance at a good outcomes.
One of the final questions that the audience asked us was what ideas we have for getting more people like us involved at every level, and I countered with a question. I asked this audience, made up of doctors and other clinicians, pharmacists, admirals and even representatives from the Surgeon Generals office, how many of them had to use vacation time to attend the meeting today. No one raised their hand....except for Emily. Patients and caregivers are asked to give up time in their already full and complicated schedules to help out these healthcare professionals. Meaningful engagement would be asking patients to be a part of the team, recognizing the value that they bring to the table, and showing them that you appreciate them through respect and compensation.
Last week, after scanning receipts and filling out forms for reimbursement, I got the most amazing email:

"I wanted to reach out to you to let you know that your comments regarding your participation at our meeting being not part of your ‘job’ did not fall on deaf ears. In addition to your time at the meeting, you also spent a lot of time planning prior to the meeting and working with us after the meeting to work through your expense reimbursement. Our team would like to compensate you for your time.

In addition, one of our Co-Investigators put forth a very thoughtful suggestion to propose to the Steering Committee, a policy to compensate patients/patient advocates/caregivers (not paid by an organization) when they participate in one of our events. If the Steering Committee agrees to this policy change, our program as a whole will not overlook compensating important contributions of patients and caregivers at future meetings.

To be compensated for my time is great. For my message to be heard, for others to recognize and appreciate the value of patients and caregivers sitting at the table for these critical discussions that will be fundamental to the changing culture of healthcare, that is an amazing feeling. I have the utmost respect for this organization, and hope that their actions will be seen and replicated by others.

3 comments:

In all our attempts to change healthcare's culture productively, so many people complain, all with plenty of justification. But as I think you know from our conversations, the question that matters is "What could be said that would make any difference?"

Wow, Erin. I echo e-Patient Dave's stunned appreciation. Your deft handling of this opportunity, and the organization's response to it, was stunning on both counts. I wish you had named the organization so that we could tweet/blog the bejesus out of it (not too late). Best wishes to you as you continue to make a difference for Drew and all patients (and THAT's everyone, sooner or later).

"65 Roses"is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.

This blog, 66 Roses, is dedicated to finding the cure.

Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Thick mucus clogs the lungs and leads to life threatening infection. The pancreas is also obstructed by this thick mucus production, imparing digestion and leading to malnutrition. - www.cff.org